Story
Hey all firstly I wanted to say a HUGE big thank you and introduce you to Ella who is very nearly 6. Ella was diagnosed with Noonan syndrome at 6 months old. When she was born she had extreme respiratory issues, severe jaundice, was extremely floppy and very swollen. They checked her over and found a heart murmur this went on to finding out she had heart disease- pulmonary stenosis with dysplastic valves. Ella had heart surgery which was terrifying and life for the first 6 months was in and out of hospital. As time has gone on Ella has done incredible, with physio, sleep therapy, food therapy and very determined parents lol Ella now has her heart issues, lymphedema, sleep issues (doesn’t sleep enough one tired mumma!) and is funny with food apart from that we r extremely lucky, unfortunately others aren’t and life is tough for them. The Noonan syndrome association has been such an incredible support for us and to raise some pennies to give back really means the world to us. Raising money for noonan syndrome means the world to Ella and her family.